The first time I read the writings of  Suleika Jaouad was in her the NY Times column  "Life Interrupted" . She wrote about her leukemia diagnosis and treatments.  In 2022, I shared in this blog a piece Suleika wrote for Nancy's List ( https://nancyslist.org/). That post mentioned her best selling memoir, Between Two Kingdoms , A Memoir of a Life Interrupted.  Back then I added ..read more

A few days ago @DrYukselUrun shared on X the ORR ( objective response Rate) and CRR (Complete Response Rate and OS (overall survival) for the  Phase 3 CLEAR trial ( combo of Lenvatinib and Pembrolizumab in advanced renal cell carcinoma).   In response,  @StrijbosMichiel posted "Most impressive results from the CLEAR trial: the percentage of patients that have to endure ..read more

My meeting days all started with picking up a bite to eat in the Patient Lounge. The lounge was a great place to meet up with other advocates from around the world, relax is comfy chairs  and pick up a bite to eat at breakfast or lunch. Sunday started with the Gyn Cancer Oral Abstract Session followed by an afternoon of meeting with clinicians I am working with as well as learning about ..read more

Over the next few days I will share my experience at #ASCO24 , the science I learned , amazing people I spoke to and of course my presentation on social media. Late in the day on Friday,  I finally got to McCormick Place. The traffic from the airport was dreadful but I arrived in time to pick up my badge from the Faculty Lounge. Then I headed to my favorite sushi place - Nui Sushi for ..read more

 From May 31st to June 4th the ASCO Annual Meeting will be held in Chicago. The theme this year is The Art and Science of Cancer Care: From Comfort to Cure. This meeting brings to McCormick Place more than 30,000 oncologists, researchers, allied science professionals and patient advocates from around the world. I will be attending in person and posting/tweeting to X from various sessions ..read more

I first met Susannah Fox at MedX in 2012 and have followed her career and blog ever since. Susannah learned from patients and online communities as she directed the PEW Research Center's Internet Project health portfolio, was  entrepreneur-in-residence at the Robert Wood Johnson Foundation and as former Chief Technology Officer for the Department of Health and Human Services under the Obama ..read more

This was the final day of the 2024 SGO meeting. I caught the tail end of the SGO Business meeting which included the passing of the gavel from this years President , Dr Angeles Alvarez-Secord to Dr Amanda Fader.   ???Passing the gavel and the torch of @SGO_org - thank you @AngelesSecord for your service and best of luck to @amandanfader - you are going to rock #SGOMtg pic.twitter.com ..read more

 I started the day off attending an ISS ( Industry Sponsored Symposium) which reviewed the use of ADC's ( antibody drug conjugates ) in gynecologic cancers. The session included patient case reviews where the audience and speakers were asked what treatment they would choose for a patient with a specific treatment experience and co-morbidities. It was very interesting to "listen in" on the ..read more

I will be attending this year's SGO Annual Meeting virtually. It is being held in San Diego, March 15-March 18, 2024. On Friday, March 15th the 2024 Patient and Advocate Education Forum will also be held, in San Diego. The Forum is sponsored by the Foundation for Women's Cancer. I attended last year's forum and it was informative and allowed time to network with other patients , advocates and ..read more

  February 29th is Rare Disease Day®. Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. Worldwide 300 million people are living with rare diseases.  To learn more about rare diseases and to read stories of those living with rare diseases visit the ..read more